Booze-N-Clues is one of the main annual fundraisers organized by Friends of Renee
Our awesome friend Renee Avis unknowingly contracted Lyme disease while hiking in the Sierras in 2008. Two years later, she discovered she had Lyme and several other co-diseases transmitted by a bug bite.
The Friends of Renee was formed by close friends primarily to raise money to pay for Renee's out of pocket medical bills not covered by health insurance, which amount to about $30,000 per year. Since December of 2011, we have raised over $73,000 from donations and proceeds from fundraisers like Blues-N-Clues Bar and Beach Scavenger Hunt. Renee has made improvements amidst some setbacks, and has more treatments scheduled to improve her condition. We hope this will lead her to a state of health where she can function normally and regain her financial independence once again.
The other goal of Friends of Renee is to raise awareness of Lyme disease, which is the fastest growing epidemic in the United States, with over 300,000 new infections every year!! Do yourself a favor: read the summary and links below to learn more about how you, your friends, and loved ones can avoid getting Lyme disease, or at least how to detect it early enough to save you hundreds of thousands of dollars in medical bills and years of pain and suffering!!
In the first two years of Booze-N-Clues, we raised over $8,000 for Renee!
INFO ON THE FUNDRAISER CAUSE:
*Beach Reporter In-Depth Coverage on Renee’s Plight: http://tbrnews.com/news/redondo_beach/friends-band-together-for-r-b-woman-debilitated-by-lyme/article_b7d4cf8c-2661-11e3-96c1-001a4bcf887a.html
LEARN ABOUT LYME DISEASE
Lyme Disease is spread primarily by the tiny deer tick (black legged tick). These ticks feed on blood, and infected ticks transmit the disease as they feed. Although the deer tick prefers to feed on wild animals, especially mice, birds, possum, raccoon, livestock, and deer, they will also feed on dogs, cats, and humans.
LYME BACTERIA – BORRELIA BURGDORFERI
• Is a spiral-shaped microscopic organism that can scoot around inside the body by rotating in place, like a corkscrew. It downloads into the bloodstream of a critter or a person. The spirochete can leave the blood stream and invade the tissues and organs.
GET THE FACTS
• Blacklegged ticks are so small they are hard to see.
• The Lyme rash is often confused with a spider bite.
• Less than 50% patients get a rash.
• Lyme symptoms can develop days or months after bite.
• You can test negative and still have Lyme disease.
• Diagnosis is based on a patient’s symptoms, history, examination and blood work.
• Lyme bacterium can cross the placenta into the fetus & can cause death. Its’ DNA can be found in breast milk.
• You can contract other diseases from the same tick bite.
• Lyme patients often get worse before getting better with treatment – it is called the Jarisch-Herxheimer reaction.
• Babesiosis are parasites that infect the red blood cells.
• Bartonellosis Ehrlichiosis and Rickettsiosis are infectious diseases produced by bacteria found in the tick.
LYME DISEASE SYMPTOMS: feeling as though you have the flu, fever, chills, extreme fatigue, joint and muscle pain & weakness, swelling in toes, ankle pain, stiffness in joints, neck or back (diffused pain), reproductive problems, heart palpations, vision problems, buzzing or ringing in ears, seizures, disturbed sleep, nausea, vomiting, cognitive problems, neuropathy, and bladder dysfunction. PREVENTION Grasp tick close to skin with tweezers & pull straight out.
• Get spray: DEET for your skin & Permethrin for your clothes.
• Check yourself & your children for ticks especially in belly button, hair and scalp, in & around ears, near waist, & behind knees.
• Put tick in a plastic bag with a wet cotton ball & write your name and date on it. Bring the bag to your vet or doctor.
• See a Lyme-literate practitioner & send blood tests to Igenex Labs.
STAGES OF LYME DISEASE
• Stage 1 is called early localized Lyme disease. The infection is not yet widespread throughout the body.
• Stage 2 is called early disseminated Lyme disease. The bacteria have begun to spread to the joints, the heart and nervous system.
• Stage 3 is called late disseminated Lyme disease. The bacteria have spread throughout the body. It can be disabling and difficult to treat.
Lyme Disease Association: http://www.lymediseaseassociation.org
American Lyme Disease Foundation: http://www.aldf.com/index.shtml
New Lyme culture test: www.researchednutritionals.com/information.cfm?id=255
Lab Contact: www.advanced-lab.com/spirochete.php
Most Rapidly Growing Infectious Disease in America: http://articles.mercola.com/sites/articles/archive/2013/09/04/lyme-disease.aspx
DONATING TO THE CAUSE:
If you cannot attend the Booze-n-Clues fundraiser, but would like to make a donation to Renee to help her pay for her medical bills, please follow these instructions:
To make an online cash donation directly to Renee's "Get Better" fund, please use PayPal. Visit www.paypal.com, point your cursor on “Send Money” tab near the top, select the option "I'm sending money to family or friends" below, and in the "To" field, use the email address FriendsOfReneeAvis@yahoo.com. PayPal won’t charge any fees unless you want to use your credit card.
We really appreciate your support and assistance!!!
-Friends of Renee Fundraising Committee
An update from our benefactor, Renee Avis (September 5, 2015):
MY MEDICAL GOALS FOR 2015 and 2016
I have hopefully 1 last intravenous antibiotic treatment that will be over 2 months long. It a brand new study consisting of 4 medications that pulses and blasts the spirochetes. One of the medications is obnoxiously expensive, and my insurance has denied it even after an appeal by the doctor. This treatment is supposed to be really hard to go through, but my doctor is confident that the results will be worth it.
Continue to work with the Chief of Neurology & Pain at USC. I need to slowly decrease all the pain medications I take, and hopefully eventually go off of them. Besides my recent back fusion, a lot of Lyme patients have an incredible amount of pain in their joints and muscles. Some would say it is similar to someone with severe arthritis, fibromyalgia, chronic fatigue, or systemic lupus.
I also need to work with the Neurology Specialist for cognitive impairments. The spirochete Borrelia burgdoreri can invade the brain and spinal cord. Once inside the central nervous system, the organism can invade the spinal nerves. I not only have a hard time recalling names but also moments in time. I forget an obvious name like Jack Nicholson to forgetting the name of someone in my family. I also can forget an entire conversation or something I did or did not do. It was a lot worse, but it is still alarming and scary.
Begin to work with a Specialist at the USC Sleep Disorder Clinic to help with my insomnia. Lyme disease interferes with the endocrine system as well as the thyroid functions. Neural targets that control thermogenesis - sleep, and mood can be affected by pro-inflammatory cytokines; which are released by activated macrophages and monocytes during infection. Without sleep, healing cannot occur. Most Lyme patients have to take sleep medications as well as a supplement such as melatonin.
Continue working with my Cardiologist. My blood test CRP (C-Reaction Protein) indicates there is inflammation near the heart. The blood report should be 0-3, and mine was at 6.82. The bacteria can enter the tissues of the heart, and infection can cause a 2nd or 3rd degree heart block. This is an alarming number, however my EKG was okay. I still need to do a stress test, and follow up with the cardiologist.
Continue working with my Oncologist: In my 30’s I was diagnosed with severe endometriosis, which has caused infertility, pelvis pain, and large cysts to form on my ovaries. Lyme disease causes chronic inflammation and these symptoms tend to be 10 x ‘s worse. Throughout the year I have to do blood work and ultrasounds to monitor the size of the cysts. Unfortunately the specialist cannot determine if the cysts are cancerous tumors or just large cysts full of fluid unless they do surgery. After 3 surgeries related to this medical illness, my oncologist said my lyme disease is probably causing the cysts to be even more of a concern, and he recommends a hysterectomy as soon as my Lyme Specialist feels comfortable with it.
Continue working with my pain management team. At the moment I can not function or make it through the week without assistance from my pain management team (massage, acupuncture, sports chiropractor). The spirochetes got into my ligaments and tendons. The pain management helps decrease the inflammation around my joints, and help with the joint flexibility. They help the week and atrophied muscles while alleviating pain by pumping oxygen into the tissues.
In addition to my pain management - Every morning I have to massage hot rocks on all my joints to be able to walk in the morning. I then have to stretch for 20 minutes in the morning and at night to be able to move throughout the day. Sometimes I can stretch up to an hour at each time using tennis balls, and different tools. At night I take an Epsom salt bath and then use my tens unit with patches for 20 minutes. I also use my hydroculator moist heating packs for 30 minutes. I also do fire cupping on myself 1 - 2 times a week, and Ugo does my back 1 x a week. My goal is to be able to go through a week without relying on the pain management and lead a normal life without pain.
To be able to drive more than 10 minutes by myself. Due to my memory problems, and also certain times of the day I have to take medication; I am not able to drive far and Ugo has to drive me to all my medical appointments; because they are almost an hour away. It would be great to let him have a day off. Also I miss being able to drive to visit a friend who lives farther away then my town. Hopefully this will change the more I work with my neurologist.
To be able to do chores by myself. My community has a program where they send a volunteer to go get my groceries, and someone to come do laundry and clean the house. Along the way, I keep trying to do these tasks, but I end up in a lot of pain or I can’t get out of bed due to fatigue. I am trying to find a balance of not doing to much, but keep moving forward.
After my final 2 month IV infusion – I need to do a long cleanse to clean out my body as well as my gut. It can take months to detox after harsh antibiotics. My Lyme Disease Specialist said with this medication combination and dose it is common to have a severe Harisch-Herxheimer Reaction (Herx). When fed high doses of antibiotics intravenously, symptoms exacerbate when injured or dead bacteria releases their endotoxins into the blood and tissue faster than the body can comfortably handle it. Usually I feel like I have the worst flu imaginable. I am extremely weak, fatigued, all my injuries throughout my life feel as though they happened all at once – incredible pain throughout the body, as well as low grade fever, chills, nausea and vomiting.
Continue to heal and strengthen my back. I ruptured my back and needed surgery, but I was not able to get it because of my Lyme disease. The surgeons did not think I would heal well due to all the inflammation that the disease causes. For almost 3 ½ years I was walking in a forward position due to pain. I was finally got my disc fusion, but my muscles are extremely weak and do not activate when they are suppose. There is a lot of compensating, and all the muscles throughout the body have to be retrained. This will take a lot of time. On top of that, Lyme causes inflammation, and I have had many relapses throughout the year. The Orthopedic surgeon can’t do some procedures he would like to speed up the healing process. But a steroid injection to the ligaments suppresses the immune system, and my immune system already does not function.
Continue my subcutaneous IVIG Immunoglobin treatments. This therapy is used with an auto immune diseases and antibody deficiencies. My infusion takes 3 hours and is administered at 6 sites on my body. Each site swells up and burns during and after treatment. It causes nausea, headaches, and fatigue. The night of my infusion I can usually sleep 12 – 14 hours. This creates and builds an immune system to one that is not working. The dose and duration may change, but my specialist said I will need to do this for life.
Getting better has been more than a full time job. It is full of Blood work, X-Rays, MRI’s, Cat Scans, Ultrasounds, ER Episodes, Infusions, Prick, Prodded, Probed, Pain Management, Several different Pharmacies, Days where I can not get out of bed, Phone Calls, Insurance Paperwork, Nurses, and all day Doctor’s appointments.
You may be thinking why has the antibiotics not solved some of those medical problems? The organisms can take up residence in biofilms or an encoated “cyst form”. This explains why recurrence of symptoms can still occur after antibiotic protocols. Complicating matters further, ticks can also infect you with disease-causing organisms, such as Bartonella, Rickettsia, Ehrlichia and Babesia. Those organisms can travel with the spirochetes and each organism causes a different set of symptoms.
However, I am making progress. Last year I could not go to an event without a wheelchair. Last year I had to constantly canceled plans with friends who wanted me to get out of the house. I mostly only left the house for doctor appointments or if best a movie. I had been sick for a really long time before finding the right team of doctors. It takes a long time at a snail pace to get better. In the past few months; I am saying “yes” more than “no I can’t”, I can leave the house longer, and I started walking around the neighborhood. Each year to the next I am getting better. I have made the most improvement in the past 6 months. I have my life back in my eyes.
* Lyme Disease New Information * - All your questions may be answered: Lyme is a bacterial infection contracted from the bite of a disease carrying tick. The illness is cause by the organism Borrelia Burgdorferi. This bacterium is known as a spirochete that is carried by a black-legged ticks and deer ticks. These ticks collect the bacteria when they bite diseased deer, birds, mice, and other rodents etc. The first signs of Lyme Disease may develop within days of months.
Although Lyme disease can be transferred in many ways, ticks are a prime host for transfer to humans due to the amount of time they feed (typically for 1-3 days although infection can occur immediately). Tick feeding practices are also designed to counteract host immune responses. This gives the Lyme bacterium time to familiarize itself with the host's DNA and immune system; allowing it to travel within the bloodstream undetected.
The movie “Alien” or some other sci-fi movie comes to mind when reading what the spirochetes are capable of… keep reading!
The Lyme spirochete (Borrelia species) is a uniquely opportunistic bacterium with an unusual ability to self-preserve. It acts more like an exceptionally intelligent protozoan parasite than a common bacterium. It is highly motile, and can penetrate blood vessels easily. It uses the bloodstream to quickly find opportune sites to hide from immune responses and prefers to colonize in collagenous tissue such as the brain and central nervous system, joints, organs, etc....
Once initial infection occurs, the spirochete takes the opportunity to activate genes that will ensure its ability to survive and thrive within the new host. One way in which it does this is by altering the expression of surface proteins further confusing the host immune system. These surface proteins are what kick-starts the immune system into creating antibodies. Essentially, the host immune system can't keep up.
Once isolated within the brain it can divide and change many times into an undetectable strain that the peripheral immune system will simply ignore. The result is an infection that can quietly inhabit the brain and other tissues for years or decades. * This is why blood tests are unreliable. * If our immune system cannot detect the infection to create antibodies, or if the infection is in a non-active state, there is no way of finding a positive result in a blood sample. Therefore, it is especially difficult to find a positive test result in someone who is in late stage Lyme infection. However, Clinical diagnosis remains the most important way of determining if someone is infected with the Lyme spirochete. It is crucial once diagnosed with Lyme disease and treatment has begun, that treatment is not stopped prematurely. Relapses can be much more dangerous and difficult to eradicate than the initial treatment.
* Immediate treatment is important or the patient can become in the “Chronic Stage of Lyme Disease”. *
The division time and life cycle of Borrelia spirochetes is longer than typical bacteria, which is why standard treatments fail. The Lyme bacterium can become metabolically inactive for long periods of time making antibiotics ineffective as they can only kill bacteria when they divide. No antibiotic can kill a bacterium that is metabolically inactive and spirochetes are well known to have mastered this form of survival. Many naturally occurring simple bacteria, such as the bacteria that cause acne, successfully survive antibiotic treatment. Simultaneously killing all the surviving bacteria in late infection with short courses of antibiotics is impossible and may not even be possible with extended courses of antibiotics.
* In its basic form, the Lyme Spirochete is spiral shaped and can literally bore deep into tissues, hide, and colonize. When it senses "danger", such as an immune response or antibiotics, it has the ability to change its structural identity into two different forms to ensure survival. The L-form occurs when it discards its cell wall and integrated surface proteins. This form often evades the immune system and many antibiotic treatments, and is capable of intracellular infection. In some cases, it can trigger an auto-immune response which then attacks our own tissues.
The cystic form creates new challenges for the immune system which can be ineffective against all various defense mechanisms of this bacterium. It mimics good cells in the host body so it can remain invisible, similar to putting on a costume. This form is resistant to antibiotics, does not present antigens to the immune system, and can shift into a reproductive state while encysted. Quite simply, the Lyme spirochete is a survivor at all costs.
Once conditions improve, the Lyme bacterium can change back into the spirochete form and "re-infect" the host. It can change forms within 1 minute of expression and survive up to 10 months before reconversion. The preferred form of the Lyme spirochete is dependent on its physical surroundings and environmental cues. It can also survive both freezing and thawing and successfully infect the host 12 months of the year.
This unique ability to shift forms and hide from our natural immune responses and antibiotics makes it difficult, if not impossible, for some to achieve full recovery. This is why relapse rates are so high in Lyme patients. It also explains why some people do not show symptoms right away, and may not show symptoms for weeks, months, or years after the initial infection. The Lyme spirochete is a highly evolved pathogen with many mechanisms of evasion and survival. Believing this disease can be easily eradicated and cured is arrogant, unfounded, and dangerous.
Definition of Chronic Lyme Disease: Chronic or persistent Lyme disease occurs if a patient who is treated with antibiotic therapy for the disease continues to experience symptoms. Doctors treat cases on an individual basis, using patient’s specific symptoms, medical history, and the latest research to guide the treatment.
TESTING FOR LYME DISEASE:
Brand New Test! Advanced Laboratory Services has developed a revolutionary new blood test Poly Borrelia Culture Test for the detection of Borrelia spirochetes that clearly will change how Lyme Disease is diagnosed and treated. Blood is collected from patients and transported to ALS at room temperature by overnight express. Specimens are immediately placed into culture media under proprietary conditions, and after one to two weeks it is tested by darkfield microscopy, polyclonal and monoclonal immunostaining, and by multivalent nested PCR (this nested technique is tough to do, but can detect femtomoles of DNA!). If Borrelia are seen then, a final report of a positive result is generated and sent to the practitioner. If no Borrelia are seen at this time, then the sample is placed into Long Term Culture that is looked at once, at two months, and a final report is generated then. Selected positives are sent out for DNA sequencing.
The test most doctors are doing and is not very accurate is called the Elisa Test. The “Western Blot Test” is much better than the Elisa Test; tell your doctor you want the Western Blot instead. The western blot use electricity to separate proteins called antigens into bands. The read-out looks like a bar code. The lab compares the pattern produced by running the test with your blood to a template pattern representing known cases of Lyme disease. If your blot has bands in the right places, and the right number of bands, it is positive. The CDC requires 5 out of 10 bands for a positive test result. However, because some bands on the Western blot are more significant than others your doctor may decide you have Lyme disease even if your Western blot does not have the number of bands or specific bands recommended by the CDC. Different laboratories use different methods are criteria for interpreting the test, so you can have a positive test result from one lab and a negative test result from another. * In a nut shell the Poly Borrelia Culture Test is the best test so far to date. Make sure you have not taken antibiotics 4 -8 weeks prior to testing.
PREVENTION IS EVERYTHING!- LYME DISEASE PREVENTION
AVOID TICK HABITAT - Ticks tend to be near the ground, grasses, bushes, and fallen logs. High risk – gathering firewood, leaning against tree trunks, playing in leaves, hiking in grassy fields instead of on groomed trail. Be aware that Lyme disease has travel all across the united states, and is found all over the world. The CDC reported that there are at least 329,000 of cases known a fraction of the cases that go unreported.
USE REPELLANT ON EXPOSE SKIN- Studies show that repellents with DEET picaridin or lemon eucalyptus oil are the most effective.
SHOWER – Once home, take a shower right away. This will wash away unattached ticks and offer a good chance to thoroughly inspect yourself. Feel for bumps that might be embedded ticks. Pay careful attention to hidden places, including groin, armpits, back of knees, belly button, and scalp. Parents should check their children.
HOT DRYER – Running your clothes in a hot dryer for 10 minutes before you wash them will kill any ticks that may be there.
CHECK AND PROTECT YOUR PETS Ticks can infect dogs and cats too. Also their fur can act like a tick magnet, carrying ticks inside your home. Consult with your veterinarian about tick-protection for your pets.
IF YOU SEE A TICK – pull with tweezers directly out – do not twist. Put in a zip lock bag with a blade of grass and wet cotton ball. Bring to your vet or doctor immediately. Ask doctor for a Lyme disease test. If the doctor does not take you seriously find a Lyme literate doctor in your area. If treated right away, the doctor may give you 2 weeks of antibiotics. Ask for 4 weeks of antibiotics to make sure you got everything.
First signs of Lyme Disease:
· Red, expanding bull’s eye rash at the site of the tick
· Fatigue, chills, and general feeling of illness that longer than a week
· All-over itching
· Feeling dizzy or faint
· Muscle or joint pain
· Neck stiffness
· Swollen lymph nodes
Help pay for Renee’s medical bills by obtaining a home purchase or refinance loan with Scott McPherson of C2 Financial Corp. By doing a loan with Scott, he will personally donate 25% of his compensation earned on your loan to the Renee Avis Treatment Fund. So far, he has raised over $3,800 for Renee!!
For more details, contact Scott or visit www.sandiegoloanpro.com, and look for the “Friends of Renee” tab on the left-hand side.
is Ed MacLaughlin and I've known Renee since I started in real estate
more than a decade ago. Renee's courageous battle with Lyme disease,
along with your commitment to ensuring that she receives the treatment
she needs, have inspired me to jump in and help.
purchasing and selling
my finger on the pulse of what's happening and often get my clients
into homes and investment properties before they hit the public listings.
No question is too small, or challenge too big. I'm here to help you
navigate the ever-changing real estate market.
Please contact me at any time.
BENT EAR PROMOTIONS
50% of our commissions to Renee’s medical fund!